January charity news – Muscular Dystrophy UK

“We are determined to find a cure”

Leanne Gateley, 37, from Manchester explains how Muscular Dystrophy UK is making a difference

Leanne Gateley, 37, always found the idea of doing a skydive terrifying. However, in March 2014, she found herself in the open doorway of a plane flying at 10,000 feet. “I was scared but I just thought of Max and jumped,” she recalls.

“I first became concerned about Max’s health when he was six months old, when I noticed he wasn’t hitting any of his milestones.”

Then, when Max was nine months old, Leanne decided to schedule an appointment with her GP, who referred him to the Child Development Centre at Fairfield Hospital, Bury, where he was given a variety of tests. “The results came back clear, so they sent us a letter saying Max had a growth developmental delay across all areas,” explains Leanne. “We started seeing a speech therapist, physiotherapist and occupational therapist, thinking Max would catch up.”

However, shortly after Max turned two, Leanne received a phone call from his consultant, asking her and her partner to attend the Genetics Clinic at the Royal Manchester Children’s Hospital. “It was out of the blue and we were worried. However, we had the letters from the hospital saying everything was fine so didn’t think it could be anything too serious.”

Leanne was shocked when the consultant explained that Max’s blood had been retested for muscular dystrophy – a genetic condition that gradually weakens every single muscle in the body, leading to an increasing level of disability. The results had come back positive. “We were completely devastated and could barely take it in. We had no idea how it was going to affect our lives.”

After more tests, it was confirmed Max had Becker muscular dystrophy, which has a slower onset than Duchenne muscular dystrophy, which also develops in childhood. “We were relieved as children with Duchenne have a much lower life expectancy, but with Becker the scope is a lot wider when it comes to how they are affected,”explains Leanne.

“Some children are in wheelchairs in their teens but others get to their forties or fifties before their symptoms start. At the moment Max is quite physically able although he tires easily. We’re always watching for symptoms and worrying constantly, which is hard.” Max was diagnosed with autism in 2015, which research suggests is more common in those with muscular dystrophy. “Max is now non-verbal, which has made it more difficult for us to know when he is in pain. He communicates in his own way – through sounds and gestures and blowing kisses – and is a very loving little boy, but at the moment it’s the autism that causes him most difficulty day-to day.”

Leanne was given an information sheet at the hospital, produced by Muscular Dystrophy UK. “I felt inspired by what other people had done to raise money and wanted to get involved. I’ve since taken part in several fundraising events.”

The money raised in The Candis Big Give will go towards ongoing research projects to help find treatments and cures for muscle-wasting conditions. “This money raised is absolutely critical for keeping vital research going. My greatest hope is it will eventually help change the lives of kids like Max.”

Muscular Dystrophy UK – THE FACTS

Muscle- wasting conditions affect 70,000 people in the UK. They cause muscles to waste over time, leading to disability.

Muscular Dystrophy UK funds pioneering research into finding a cure and offers emotional and practical support for people with a muscle- wasting condition and their families.

Muscular Dystrophy UK has been leading the fight against muscle-wasting conditions since 1959. The charity relies on public donations to fund its vital work.

BIG GIVE UPDATE

The money raised will go towards employing two PhD students and a Clinical Research Fellow, who will be involved in research into cures for muscle-wasting conditions, which can potentially shorten the lives of those living with them, and for which there is currently
no cure.